Pain Pain Pain

One thing I don't talk too much about is the pain.  One of the tumours is in the apex of the left lung and is interfering with a group of nerves called the brachial plexus.  This group of nerves basically provides almost all the nervous functions of skin and muscles for the entire upper torso - meaning I get a range of pain feelings from pins & needles in the skin of my left arm/hand along the ulna and radial bones, numbness, an internal itching that cannot be scratched, burning sensations, and your basic stabbing/ache type pains.  Added to that, the pancreatic tumour sits in the middle of an incredibly sensitive organ, so producing a griping pain in the midriff area.

So that's the mechanics.  But what about the practicalities?  I'm currently taking 75mg of Imiprimine each day, 80mg of Oxycodone (a derivative of morphine), and 150mg of Diclofenac.  On top of this little lot I've been having an extra 40-50mg Oxynorm liquid over the course of the day.  And this last week, the pharmacy screwed up so I didn't get my Diclofenac until a day later, by which time the pain had returned with a vengeance - then it takes days to get 'topped up' again!  All these meds have left me constipated yet again.

The worse thing is when it starts in the early hours - like this morning when I woke at 5am in considerable discomfort.  The two hot wheat-packs did little to settle the pain, which seemed to come from my entire stomach/midriff area, and by 6am, when I wanted to take some oxynorm, I couldn't because I have to take the Tarceva chemotherapy tabs on an empty stomach, and hour before eating or drinking.  I have to take the chemo at 7, so at 6am I went downstairs to try to give hubby a bit of respite, and to put the telly on to drown out my sobbing and howling.  I managed to hang on until 8 am when I downed the morning's meds, but waited another hour or so for them to kick on, having let the pain build up so much.

Luckily, it doesn't hurt when I ride, and most of the time the pain meds have been working well - but this week has been awful.  If I'd been told how much pain I'd experience this year I'm not sure what I'd have done! 

I love my life and am so grateful to still have it, but when the pain really kicks in and my husband and children have to watch me writhing in agony and sobbing like a baby with colic, that's when I get really scared.  But I never say I want to die, I say I want to live!  And I look to the day when this is all over and I can live a normal life again - sleep through the night, and go more than an hour without pain medication!

Righto - am knackered now - so gonna go get some catchup sleep!

A Long and Rambling Catchy-Up Post...

I'm behind on blog posts once again, but only because I've been so busy - which is a good thing, isn't it!

Last week I missed my riding lesson due to a mix up (I got there and it'd been booked for the day before), but all was not lost.  I stayed around for a few hours and helped out a bit.  After grooming two horses and tacking one up I was soaked through to the skin with sweat, and exhausted.  After a little rest I did some yard brushing with the other girls, and then led a pony for a child's lesson - now that was interesting!  Walk is fine but running alongside a trotting horse for one lap of the school was knackering, and the poor girl who was also leading had to do both canter runs because I just wouldn't have made it!  I had a second brew (and a breather) before rugging up some more horses, and then I was done for and had to call it a day.

Saturday was the day of my youngest's birthday party - roller skating at the YMCA - and I was so pleased to manage to be there for the whole day!  I can't tell you how good it felt after a year of missing everything/leaving early/having to be taken home in a state!

Anyway, it's been a good couple of weeks for pushing the boundaries and setting new limits.  As the party was in a place where they also have a climbing wall, and as one of the mums is a climbing instructor, I even ended up doing a little climb - and before you get too excited, it was only the slabby bit, and I was shaking for about half an hour afterwards, and while I'd like to say it was the exertion, it wasn't - it was pure, unadulterated terror, followed by absolute relief.  I haven't climbed in over two years.

Oh God!  Am I really going to do this?!

Higher up now - over the yellow line... those 10 to 2 feet really come in handy here!

Okay - can I come down now please?

Abseiling  - like riding a bike, you never forget how!

Sunday I got up early and took the little one and her friend to their riding lesson, had coffee with the other mum, then met up with some other friends in town for lunch, did some Christmas shopping, and then visited another friend on the way home!  Monday I was cabbaged, on the sofa and did bugger all.

But Tuesday I had a jumping lesson - back to square one (well poles on the ground), and then back up to a foot and a half!  It was a real adrenalin rush getting over the first vertical, but they say you should do something everyday that scares you.  I've no idea who they are, but they have a point - a little scare really makes you feel alive. 

Oh, and poor Bramble went in to be neutered.  My little one has been telling everyone that, "Bramble is having his balls cut off!" and worse, asked the vet if she could have them to take home!!!  I collected him in the afternoon and he was still groggy - poor thing.  Had to be done though - I couldn't stand to watch him trying to reproduce with his little beany baby kitty anymore - all that howling and frustration as he strained to attach his back end to a tiny stuffed toy!  And hey, no paternity suits now either.  Plus, he shouldn't stray too far now.  I've no idea what he makes of the whole business but seems okay considering.  He can't jump down from the counter top yet (still a tad sore no doubt), but he's eating and all that again.  I'm a bad bad bad kitty owner!

So Wednesday I went on a 2 hour hack and scared the living crap out of myself for a brief moment or two.  Instead of the beach we went on 'the path', only the path wasn't flat but like a roller-coaster, and the first part of the path a pretty severe drop of about 3 foot (which looked like a vertical cliff from where I was sitting!).  Thomas, who I was riding, was really forward that day, and instead of stepping down carefully and slowly, as I expected, he leapt off the top landing in canter and then taking off down the path at break-neck speed, clearly chasing the lead horse, and leaving my stomach back on the top of the sand dune.  But after that it was fantastic - up and down the hills we went, following the path as it curled its way through the trees, ducking under low branches until we finally came out by a nursery school and all the children waved to us and shouted, "Hello horsies!"  It was so good, and I even had enough left in me when we got back to take the tack off and rug him up. 

After that I went to the hospital to collect more Tarceva.  Then I made a serious cock-up and went to MacDonalds, and before you say anything, I paid dearly for a small chocolate milkshake, small fries and sweet chili chicken deli sandwich!  By the time I got home the pain had started, and I was in tears by the time the kids came home from school.  Silly silly me!  Was it worth it?  Not really, no.

Today I've been recovering and had yet more pains, but not the make you cry sort, just the rocking back and forth sort. 

So life is good despite having cancer and being on chemo!  My stamina is improving bit by bit, and though I still need to keep pushing myself more and more, I do feel as though I'm making progress.

Haven't done much writing though :( but then Rome, as they say, was not built in a day, and I had a lovely visit today with a friend who writes - and it was really inspiring to be able to talk about writing again with someone.  So at least I'm thinking about the project loads, so much so that the thing is written in my head and just needs committing to paper!

Enough pointless rambling from me - I'm off to bed to listen to my healing CD!

Just a thought but...

...some things you might like to think about before saying aloud to friends with cancer - or any serious, longstanding illness for that matter - and some alternatives...

1. On noticing how much weight your friend has lost - "OMG!  You're soooo thin!  Please let me in on your diet secret!"

(Try something like, "You look great - at least there's one good thing come of all this," or alternatively keep your mouth shut!

2. When seeing a friend for the first time after a diagnosis, "How long has the doctor given you to live?!"

(I can't honestly think of an alternative for this one - and it reduced me to tears.)

3.  You haven't bothered to get in touch for over a year, but now need a phone number from your 'friend'.  Please refrain from sending a text that reads, "Sorry I haven't been in touch, but been thinking about you.  BTW have you got X's phone number?"

(Hint: FIND SOMEONE ELSE TO BOTHER!)

4.  You've had a really bad day/week/month at work.  By all means complain about it, but please don't say, "You're soooo lucky being off work!" because however bad work is, it is NOT as bad as waking up every morning with a life threatening illness - being stuck at home, alone, most of the time, and having to work your mental, physical, and emotional backside off just to be able to face the day!  We would MUCH rather be at work, and not having to do marking is NOT lucky - it's crap.

5. You phone your friend to ask how they are, and they say,"I've been a bit down lately, and I'm struggling to say positive."  Do not say,"That's okay, I'll come to see you and we can be miserable together!"

(It may seem like empathy to you, but it's the last thing your friend needs!  They need positivity, and someone to help them smile again.  And however bad your problems seem, unless they include someone's life being at risk, they just won't cut it.)

6.  Some people are just naturally negative.  These are those unlucky individuals who see the glass as, not so much half empty, as smashed to pieces.  These are the people who ring you up to say, "How are you?" and then proceed to 'share' every bit of bad news they've heard that week with you.  They'll start with, "God, isn't the weather horrible today?!"  They'll then go on to tell you about the child who got murdered, the bomb that went off killing x number of people, and how depressing the world is.  If this sounds like you,

The weather is not horrible.  It is weather.  Unless you are in the middle of a natural disaster, try to see the rain as rain, and grey skies as cloudy.  If it's cold, put more clothes on and consider those who live in the Arctic!  If it's raining, think how fresh everything will be afterwards, how well the trees will grow.  If you've seen bad things on the news, don't bother telling me about it.  Chances are I saw it too.   Look for the good in life - the good news stories - they do exist if you're willing to look hard enough.  For all the starving people, there are projects and people working to alleviate the situation (and of course we need more but the fact is, there are people who are trying to make a difference and that should furnish us with hope and good faith). There's one poor soul I know who, when you say, "Isn't it beautiful out today!" will say, "Ah yes, but the weather report said it's going to be horrible later."  This same person has a heart of gold, but will complain endlessly about everything from their job, to their partner.  (And no - they don't read this blog, thank god... I'd be mortified if they read this and recognised themselves!)

* * * * * * * * * * *

I hasten to add that I have been fantastically lucky with the amount of support I've had/continue to receive.   And almost everyone has been very thoughtful and careful about what they say, and I wouldn't want people to be ill at ease with me, watching their every word, either.  It's just that since my diagnosis I give thanks every day for my friends and family, and my life.  I have realised how insignificant the 'problems' I had before actually are.  Even pretty major things like divorce, losing one's job etc., pale into insignificance when life holds a loaded gun to your head, trigger cocked.  Even when you learn to live with/contain the terror (and it is real terror), it can still catch you unawares, and it is very hard work (at first) to keep your thoughts positive and wholesome (it does get easier with practice though).

And I have noticed that one or two people still think that a bad day at work equals living with cancer/being on chemotherapy, or that just because I'm off work, I have all day to listen to people's so called problems.  I wish I could bottle up this insight I've been blessed with, and enable these negative people to appreciate what they do have, rather than focusing on what they do not have. 

And I don't mind listening to people's problems generally.  I like being able to help, or just be there for people - but there are days when I can't handle it, when I  need support/cheering up/to hear positive things.

Luckily I have my dad, and mu husband, and a handful of other special folk who are always positive for me, and do appreciate how lucky they are to have their health!

So - love and good health to all of you reading this, and I send you positive vibes in all you do/experience.  I send you feelings of gratitude for all you do have, and the hope/belief that you will get all the things you feel you need.

Fancy a little walk?!

Just had to share this with you! Some brave person has filmed himself walking El Camino del Rey in El Chorro, Andalucia, Spain, so you don't have to! This is just the sort of thing my hubby loves!

Now I've been to the start of this path, and it was bad enough getting there - you have to walk along a railway bridge, and through a tunnel timing it carefully with the passing trains!



I'd rather be on a horse at full gallop on the beach to be honest!

And time marches on...

My eldest just turned 16 the other day.  I can hardly believe where the years have gone!  One minute she's this tiny babe in arms, and the next she's a grown woman (well looks like one at any rate!), all mature (most of the time), and sensible (ditto!).  The little one turns 9 in a few days too - just another reminder of time is marching on.  But it's great too, to see them growing up healthy and strong, and nice little people too.  Just makes me feel old!  It's when you realise that there are grown ups in this world who were born in the 1980s - eek!

Yesterday I went on a hack.  It was a small group, just me, two OAPs, and the riding school instructor.  The weather was perfect - crisp and clear blue skies, sun shining, no wind at all.  We had all the usual excitement as we made our way along the road up towards the beach; a bus driver who whizzed passed and then stopped dead, freaking the horses out.  The little guy I was riding (Thomas) decided the side-walk looked like the safest option and skipped up the kerb before I could stop him.  Luckily there were no pedestrians.  A car flew past doing about 40 mph and I only just managed to contain my middle finger.  Bastards!  I wish drivers would have some common sense around horses!

Once in the nature reserve though, it was all smiles from dog walkers and waves from small children!  Thomas, the pony I was riding, turned out to be quite forward going, and broke into a canter as we crossed the sand dunes (I think he needed to, just to keep up with the others as he's only got little legs!).  I'm a bit wary of going down hill at anything other than a slow careful walk, but Thomas insisted on showing me that it was perfectly safe to canter, let alone trot, down quite steep inclines!

The beach was perfect - tide just going out, leaving us a lovely wide strip of firm wet sand to canter along, and just before turning back to head for home, we had a little paddle in the sea.  Thomas went into the water fine, but then got freaked out by the white foam at the water's edge and it took a while to get him to brave his way back onto dry land!  Eventually he did a hop, skip and a jump to join the others, and then we all turned and galloped down the beach at full speed.  I'd forgotten just how knackering it is though, and was so out of breath, that by half way I had to sit down, which meant we were last in our impromptu race.  It took me ages to get my breath back, and I was soaked through with sweat (side effect of the tumours).  But it was fantastically good exercise!  To end a perfect ride out, the gentleman who was with us, told me he was celebrating 10 years clear of cancer!  I thanked him for inspiring me!

I've had pain again, in the evenings, and it's been getting me down a bit.  I need a good old boot up the backside to get this writing done!  Luckily, I'm to re-enrol on the PhD in January, so at last have a deadline to work towards!  The Novel Racers asked me if I had any plans for 2009, and I didn't know where to begin beyond, stay alive and finish my novel!

A New Hope in Tarceva

On Friday, I had to go up to Clatterbridge Hospital to see my oncologist and collect my new meds.  Tarceva is a tablet that I have to take at the same time each day, on an empty stomach, and an hour before eating.  The side-effects are quite do-able compared with chemo/radio, with a skin rash of varying degrees of severity, diarrhoea, and dry eyes, but after 6 days, I haven't noticed anything at all.  It's a treatment you keep taking for as long as it is working - and working can be taken to mean 'keeping the disease stable' or even 'reducing the tumour sizes'. 

I have very high hopes for this treatment.   It has done well in all the trials, and has only just been approved for use in Europe on Sept 21st.  It is for people who have non-small cell lung cancer (NSCLC), and for whom chemotherapy has failed.  I'm convinced that this is the one that's going to work, but then I have to be - there's no other options.

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Fed Up

I've been a bit fed up with myself this week.  I just don't seem to have got anything done!  No writing, no hour a day on the Wii Fit (great fun so why do I need the kids to set it up before I'll get on it?!  The yoga is brilliant, too, although the Wii Fit Age thing is odd - one day I was 48 (?!) and the next I was 35!  Last time I was 50 so maybe I'm just too scared to get on the thing again!).  Need to pull my finger out and get straight.  No really, I do!

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Riding

Yesterday I had a riding lesson at 9.30am.  My friend, J, who has just started riding too, booked it.  I cursed her as I fell out of bed, bleary eyed, and pain-killer-less, but by the time I got in the car and drove along the coast road to the stables, I was quite grateful to her.  It's great to be up and about early (well, okay, so 9.30 isn't that early!).

The riding lesson was superb.  I rode Henry, and was there early enough to tack him up for a change.  We rode in the outside arena, and I was learning how to get his head to bend into the 20m circle we were tracing in the sand, and although I managed to get him to do that, while keeping hands and body 'still' (i.e. moving in time with Henry), my leg wasn't strong enough to stop in falling in, so our 20m circles were more like 10m shapes that have no name! 

It wasn't all a disaster though.  Without wanting to be too technical, I got him working  in a lovely outline, and he never once tried to tank off with me!  My instructor said that Henry was thinking to himself, "At last!  She's sitting properly, and holding the reins properly, so I'll do exactly what I'm asked.  I rode with my stirrups longer (as in dressage) which was weird at first but worked a treat.

Next week I'm going on a group hack with lots of people I've never met!  It'll be 2 hours out, along the road for a short while, then onto a bridle path. 

Gallops on the beach - Red Rum trained just up the coast a little!

Over the level crossing  (that can be interesting, especially when lorries bumble over the lines, clanking and squeaking!), then up onto National Trust land, over the sand dunes and onto the beach for a gallop. 

National Trust Red Squirrel Reserve Pinewoods (though we only canter along the bridle path bits obviously!)

Coming home we go through the pine woods, cantering up and down hills, ducking under low branches.  I love it, but haven't been out for so long that I was starting to get nervous of it.  That's why I'm going next week, before it's too late and I bottle out all together!  Likewise with the old jumping, which I haven't done in ages either.  So the week after, I'll be pairing up with Siobhan and getting to grips with some poles (starting on the ground!!!).

The Last Word is from Mock The Week!

Things You'll Never Read on Face Book

1. You have 0 friends.

2. Banksy has written on your wall.

3. Lord Lucan has updated his status.

4. Osama bin Laden is in Croydon.

5. Gordon Brown has left the group, 'Let's scrap the 10p tax band'.